jfm
Posts:5
i have been on a immunotherapy trial since last october...scans have been showing stable disease with slight decrease in tumor burden and no new metastatic disease..however last ct scan revealed one single lingular node that has increased in size since prior exam rest of nodules again stayed the same or decreased...
wondering if any one had similar experience and what is the thought process in cases like this..
thank you for reading
JFM
Forums
Reply # - January 23, 2013, 09:37 AM
Reply To: ct result
Hello jfm, Welcome to Grace. I'm very sorry to know you're hear because of progression of your cancer. Dr. West and others have created an extensive library on many common and not so common complications of cancer management and treatment. What you described is known as a mixed response and not that unusual.
I've linked you to some information found in our focused cancer info section. The first 2 were in lung cancer specifically and the 3rd though it may not relate to you, not sure, is located in the the basic cancer info section.
I hope the info is helpful. You will probably have a more specific question after doing some reading and we will be happy to field it (When I say we I usually mean a doctor, of which I'm not one. :) )
http://cancergrace.org/lung/2013/01/07/biology-of-mixed-response/
http://cancergrace.org/lung/2013/01/01/mixed-response-video/
http://cancergrace.org/cancer-101/2013/01/16/progression-rate/
Reply # - January 23, 2013, 11:38 AM
Reply To: ct result
thank you catdander:)
i am familiar with the links you have sent me i have been a member since april of 2011 and though i only posted once i have been reading and being informed through the site...
radiologist have not called it a progression yet.. recomends follow up on renegade nodule..which will be end of february..
i have responded to chemo also and this is the first time a single node has grown..and have not developed any distant mets...still it was a dissapointment of course to encounter a lead runner...after being stable for so long with immunotherapy... was just wondering what the would be a thought process amongs the expertson the field when they see something like this..
thanks again,
Eva
Reply # - January 23, 2013, 01:37 PM
Reply To: ct result
My judgment would be that this is exactly what you don't want to over-react to. Finding some measurable progression when you squint isn't a clinically significant situation, except if you over-react and change treatment that was perfectly good or add a new intervention that could have adverse effects but for which there isn't a clear justification. My approach and strong recommendation in these cases is for everyone to calm down and not overtreat the scan, but rather to look at changes over time, being very judicious about whether a switch from one treatment to another, or an addition of a new intervention, is clearly justified by the magnitude of the change.
-Dr. West
Reply # - January 23, 2013, 03:20 PM
Reply To: ct result
Thank you Dr West for your promp reply and opinion...
as it is i experience no symptoms from the disease..other than the bi weekly infusions i am not on any medication..blood work has been very good and over all health other than cancer is great...thanks to the no side effect immunotherapy my quality of life is excelent...my worrie of course is what would happen if i need to swich tx...one single node that measures aprx 2.5cm by 2cm now that used to measure aprx 1.5cm by1cm is the only negative changes i had since diagnosis.. wondering if only a single node grows would it be one of those situations where one would potentialy radiate... granted every other nodules behave..
thank you once again,
Eva
Reply # - January 23, 2013, 04:12 PM
Reply To: ct result
one more thing...could a trauma to the body cause a nodule to plump up? i know its far out there but..
i went skiing and took a rather large spill hitting my left side and my head... had a chest xray to make sure my port did not get dislodged...port was fine but plump nodule has appeared..ct scan 2 weeks later confirmed it..
i know calming down is a thing to do..though in a cancer journey..not always easy...
Eva
Reply # - January 23, 2013, 04:27 PM
Reply To: ct result
I don't mean to trivialize dealing with cancer -- I just hate to see people harm themselves because they're frantic about a miniscule change. As it is, that change in size you describe isn't trivial. It's much better that it's a single node, and it's not a huge change, but that size change isn't just a millimeter or two over a year's time.
I'd really look at the algorithm I created to describe this very situation of an indolent disease process (whether because of the natural history of the disease or the effect of a generally effective cancer treatment, or both):
http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/
In it, you'll see that I generally favor consideration of a local therapy like radiation if there's a single area growing at a clinically significant rate, against a background of excellent disease control. So that's certainly an option in my mind. And the longer you follow things and see one area growing but nothing else moving, the more confident you can be that local treatment actually makes sense.
As for trauma causing isolated nodal enlargement, it's possible, but I agree it's "out there". Infection? Sure. But trauma...not very likely, and probably only plausible as a rather short term effect (days to weeks, maximum).
-Dr. West
Reply # - January 24, 2013, 12:17 PM
Reply To: ct result
Hi Eva ... at the risk of sounding like Pollyanna, I think it's amazing that you are ski-ing, and even more so that you have no symptoms.
However, I know what you mean about it being hard to stay calm. My whole life at the moment seems to be about holding my nerve. But I'd be pretty encouraged by the fact that the radiologist hasn't called it progression and that it's not causing you any problems. Sometimes I wish scans could be abolished so we wouldn't know this stuff.
It's great to hear that the trial has kept you stable for so long. I'm sure others on the site will be interested in MDX 1105, so I'm posting a link to what I think is the right one?
http://www.clinicaltrials.gov/ct2/show/NCT00729664
Very best.
Reply # - January 24, 2013, 05:57 PM
Reply To: ct result
certain spring...
thank you for the kind words..:)i am not sure how common but i have stayed active through my treatment i work full time ride a bike ski run hike etc...
also wonder if tumor now would show a different mutation than it had before..never had a biopsy tested only through malignant pleural effusion...
i guess i will only know next step after next ct scan at the end of february...or if i start to have symptoms:(
until than hoping for the best...
thanks and wishing everybody a moment of sunshine
Reply # - January 25, 2013, 02:29 AM
Reply To: ct result
Agree about the sunshine! Here (UK) we've been in the snow (no ski-ing though!)
Keep us posted.